Not sure where to start this one - Mr. Oatmeal unable to get started, imagine that??

On January 5^th at 10:07pm one of my oldest real life friends posted a note on Facebook that I am still having trouble processing.  We have known each other since the 60’s when we were both fortunate enough to be born in Millerstown Ohio.  I moved away (same county) when I was 5 and then moved farther away (a couple of hours) when I was 11.  Then I moved back (same county) after my Mom remarried when I was 14, which is a story in and of itself.  Then moved back to Millerstown when I was 15, where she had been all along.  There was a time after I went in the military that we were hanging out together, I used to make the trip up to Morehead State University in Kentucky while I was stationed in Norfolk Virginia.  Over our lives we shared A LOT of experiences that were unique to growing up in small town Ohio. 

We kinda grew apart in the late eighties, I would occasionally see her and my other Millerstown friends on my sporadic trips back to Ohio.  That was in the days before email, texting, tweeting and even cell phones.  We had paper address books and placed handwritten letters (before computers were big) in envelopes and put a stamp on it and away it went.  My life was busy seeing the world in the US Navy and I assumed hers was busy practicing veterinary medicine, which is what she went to school for.  Actually it was Animal Science and Veterinary Technology as I just learned from her information page on Facebook.  It seems weird how close we all were back in the days of drinking beer and smoking dope on the stoop in Millerstown compared to now that we are loosely reconnected via the Facebook thing.  Seems weird to even say it that way, having moved away from there and never going back it seems like memories from whole different part of my life that resides in a light fog, remaining just out of focus.

There were a few years, from about 1979 to 1983 (when I left) and most likely beyond that where Millerstown had quite a crop of delinquents (that is an over dramatization, most were not delinquents but through my drunk and stoned eyes they appeared that way so that is my perception not the actual reality).  At least that is how I remember it.  There were a lot of us kids that hung out in those days, there were the Bodey’s and Basey’s, the Ervin’s and Lockwoods, the Vanscoy’s, Bronne’s (sp) and Swearingen’s, and Scott’s, Pond’s and a Williamson.  Some of us were thick as thieves and others were associated by being from the same town that had a population of probably 100.  I have never made a conscience effort to disassociate myself with my origins but it seems the only folks I ever really stayed in touch with were the Vanscoy’s.  I really don’t know why that is. 

We all seemed indestructible back then, I suppose that is true of all kids but to my limited knowledge all of us Millerstowners are still kicking around in one place or another.  I have lost many friends and family in my life, young, old, sick, healthy but I have not lost any friends from my far back youth that I was close with.  Now to be clear I HAVE NOT lost my friend, but she is facing some pretty tough medical challenges, as you will see when you read her post.  I am not sure what to say or what to do and why I feel differently than I have about all my other friends who had medical challenges.  Is it because we have known each other so long?  Is it because we were more than just friends for a while?  Is it because we shared so many experiences during our high school years?   Is it embarrassment that I had no real idea what she has been up to for the last 20 years?  Is it a blend of all that?  

There is a simple pragmatism in her post, maybe that is what I am missing.  There was never any bullshit with us kids from Millerstown, we were who we were and if you had a problem with that, well fuck you.  That was the attitude we had, not sure why and not sure if that is prevalent in all small towns but it was like that where I grew up.  Maybe because my work right now is so not that, my job right now has me playing politics, negotiator and placator.  Those are not my strongest skill sets, I can do it but it tastes like a warm Kroger cross cutter beer (hahaha, for those who remember how shitty that beer was…… it was the only beer I remember not being able to drink and throwing out the car window).      

I am not sure why but her post, which is posted in its entirety further down, made a flood of memories come raging back into my head and I was unprepared for the torrent.  Not just about my friend, but all my friends and my time growing up in small town Ohio.  It is hard to describe really, I grew up in a small town with all the dynamics that brings to life and have lived my adult life in bigger cities have experienced all that comes with that.  I am pretty sure I don’t I miss small town life, it is just a vastly different lifestyle. 

Her bravery in the face of such adversity is admirable, but I would expect nothing less from her, same as when we were kids – no room for bullshit in her life.  I am unsure what to say……… seems like an awkward silence in the conversation, if that is even possible when I haven’t actually talked to her for years.  Maybe that is part of it, guilt for not staying in touch with someone I knew so well back in the day.  I guess we all have this train ride of life going on and along the way people get on our train and then get off.  Some stay longer than others, some are on the train for just a few days and others ride all the way to the end with you.  Maybe that is one of the mysteries of life, who gets on when and how long they stay. 

I hurt for my friend and am just am unsure what to say or how to say it that is not weird or uncomfortable for either one of us.  We have been off each other’s train ride for so long it just seems…….. I don’t really know what it seems like.  I just want my friend to be OK and not have to suffer through anything let alone the list of medical issues she dealing with.  I am raising up some prayers for strength for my great friend and am asking you to do the same.

Here is her post                   

Kidneys, Creaks and Crohn's.

I don't know exactly why I am writing this note. Maybe to inform, or maybe to clarify things in print for myself. I'm at a decision making point (again) with my health and my life. I find having things written down, or in this case, typed, helps.

In 2006, I was diagnosed with an autoimmune(AI) chronic kidney disease called Focal Global Glomerulosclerosis.   It is basically your immune system turning on you, and what this type does is build scar tissue across all the tiny tubes that filter blood and fluids through the kidneys. My kidneys were working at approx 35% at this time. Because it slows up the process of fluids going through from kidneys to bladder, fluid backs up and causes high blood pressure. I had been told I've probably had this since at least 1999, when I was pregnant with Wyatt. Symptoms such as the HBP did not show up until 2006.  To remedy this, I take meds for the blood pressure, and was told to stay on a low protein diet, 30g per day, avoid  beef, pork, dairy, eggs, and high amounts of phosphorus.  The proteins in those particular items are very large when broken down, and are hard for my kidneys to pass through. I also can not drink a lot of liquids.....period. I cannot take ibuprofen for any reason because it can shut my kidneys down, nor decongestants bc of blood pressure meds.  I work on my feet 8 hrs a day, and any fluids I do drink end up in my lower legs(swelling) until I'm home and can get my feet up. I have dealt with all this for almost 6 yrs now, changing my diet, getting regular blood tests that monitor everything, reading anything I could on it-only about 50,000 people with this disease, getting depressed, angry, then coming to terms with it. I have an awesome nephrologist-kidney dr, who tells me if I am craving something I'm not supposed to have, then I must need it, just do it in moderation. The blood tests measure an important waste product, Creatinine, in your blood stream. Because the kidneys do not filter correctly, a lot of the waste gets recycled back to the blood stream. Once that level gets to a certain point, you have to be put on dialysis.....forever, or until you get a transplant. They go by stages, as in other diseases, from 1 being mild to 5 being dialysis. I was put at a level 4 in 2006, but have reversed to a stage 3, due to my diet changes. It won't go back any farther, I was just lucky to catch it fairly early.  Back to the waste in the blood though, it makes you tired, irritable, gives you brain fog, etc... basically toxins in the blood and less oxygen.  And as far as a transplant, family would be last resort because my body would attack it just as if it were my own because of being similar genetics. I am currently with 28% functioning kidneys, with my left being a little worse than the right.     It has been fairly smooth sailing since about 2007 until 2010.

Early spring of 2010, I noticed my hands hurting really bad, especially in the morning and late evening. Didn't really pay much attention until I went on a bike ride with the kids, my first and only bike ride of the year. My knees swelled so big a few days after, I had to call the Doc. She checked me out, did blood tests, of which the inflammation factor came back really high. She referred me to a Rheumatologist and after a lot more tests, it was determined I had Rheumatoid Arthritis. I ended up having both knees drained of fluids, and after trying to decide what meds to put me on, finally settled on Plaquenil.  Plaquenil is an anti-malarial drug, and in a class called a DMARD- disease modifying anti rheumatic drug. Go figure. They don't know how it works but it does help some people. It seems to help my swelling more than the pain, and guess what, I can't take that damn ibuprofen bc of my kidneys.  The next  safest line of defense is Methotrexate, which is a chemotherapy drug, and can cause havoc for the kidneys. Most meds have a black flag, DO NOT TAKE IF YOU HAVE KIDNEY DISEASE. I am getting to be able to read fine print really good now...lol. My rheumy is taking a very conservative approach and I am thankful for that.    On another note, I would like to clarify that Rheumatoid Arthritis(RA) is NOT, NOT the same or even close, to Osteoarthritis. Osteo is from wear and tear to the cartilage between joints. RA is another autoimmune disease which is your cells attacking yourself. It generally affects the synovial fluid between joints, but can also damage heart, lungs, skin, not just joints. It’s a whole other beast eating away at your body. I even have a rheumatoid nodule on my voice box that flares up. Cold humid weather aggravates it, anything can really stir it up, and it causes extreme fatigue, fevers, parts of your body are inflamed and hot, but the rest of me freezes. Everybody that knows me knows I'm always cold. Eventually, if it progresses fast, it will disfigure my hands and feet first, then elbow, maybe knees. And it can and will eventually cause Osteoathritis, which will double the pain. I can hardly wait.

You would think that my immune system would be quite busy at this point, seeing as how it has my joints and kidneys to harass. But no, guess what happened this fall? I began to have abdominal pain in September that progressively got worse. I put it down to stress, of going back to work after 11 months off, then having Dad diagnosed with cancer. Was treated early on for a GI bug, seemed to improve, then got worse again. The only thing that seemed to help the pain was being very still until it passed. It was always worst in the evening, so I gave up eating later in the day.  I had some CT scans done, of which I could not have the IV contrast(darn kidneys), but I could drink the oral contrast. Yum! It sat in my gut for who knows how long, making me sick and getting a migraine. The part it wouldn't go through(like it should have) was the last part of my small intestine, the ileum. It was inflamed, and the opening very small.  Initial diagnosis: Crohn's Disease. Oh yay, another autoimmune disease was my first reaction. My doctor was more upset than me.  She referred me to a gastroenterologist, where I have had almost the entire length of my digestive tract examined, photographed and biopsied. Still waiting on the biopsy results, but his "informal" diagnosis is Crohn's. Right now it seems to be limited to the small intestine, no ulcers or holes, thank God.  He also tested me for Celiac's Disease, which is the gluten intolerance, but it just doesn't have the same ring to it as Kidneys, Creaks, and Crohn's. :-)  For now, I am waiting on my next Dr appt. He gave me a list of meds he wants to use, 3 different ones, all scream DO NOT USE WITH KIDNEY DISEASE.  I told him any meds I take have to be approved by my kidney doc and myself before I will take them. Some meds I can take, but the dosage has to adjusted a lot. Most drugs I can't take. I do want to mention that surgery generally is not an option until the bad part of the bowel is so bad it creates a blockage. It being an autoimmune disease and all, will just come back and attack again. But I am seriously considering it, for one, most people are diagnosed with Crohn's while in teens and 20's. I am 46 and if it doesn't get bad again for another 15 yrs then that has preserved my kidneys for another 15 yrs. If it comes back right away, it would be useless.

So now I find myself actually looking up more info, alternative therapies, diet control, surgery, anything I can get my hands on. I couldn't make myself do it sooner, its hard to explain why, but when you're handed a diagnosis of which you know there is no cure, no reversal, you kind of go through your emotions almost like dealing with a death. There's denial, grief, depression, anger, and then hopefully you get to a calm even keel. I think I am at the anger part already, it seems soon, but I went through a year or longer of those emotions with my kidney diagnosis. Maybe I am immune to it now, who knows?  Now that's a joke, I am immune to everything BUT myself.  Had to insert a little medical humor there. I am so glad that I do have a medical background, even if it was in the animal world. I need to go back into a medical field, if at all possible.  I am going to go back to my reading now, then go to bed. Tomorrow's a new day!!